I was diagonised with an under active thyroid June 2015 and told I was very poorly, my results were quite bad.Doc gave me Levo and I took a big nose dive. Tried me on another brand and I reacted so badly I refused to take anymore. Doc referred me to Endo with a 3 month wait for appointment.

I started buying Arnour thyroid and by time I saw Endo I was feeling great. Endo went mad I was self medicating and took bloods, which came back just slightly above 'normal' range

Which only confirmed to me that I was right on track with self medicating. My doctor agreed to give me Armour on prescription. That is until today. He has now decided that it is illegal to give me Armour and has refused me a NHS prescription but will give me a private one. He has done this and left me with no tablets.

I have told him that I refuse to take any other tablets as they make me so poorly that I cannot function. I can't afford to order these privately so what now . He has said that I either go back on Levo or become very poorly again.

How can they justify doing this to a person. Has anyone else received this abrupt withdrawal of medication

Will armour be cheaper on a private prescription or buying these direct from overseas. They are currently £170 for 5 grains (100 tablets)

Any advice would be great. Thank you in advance X

Read more about...

Well the good news is that you can buy your own meds from abroad without a prescription and they will definitely be cheaper. I use thiroyd which is the same thing as Armour. (An NDT) but made in Thailand. Price is around £70 for 1000 x 1 grain tablets. There are lots of other brands and armour is the most expensive one.

However.... The doc isnT behaving very well in just removing the meds which proved to be efficacious for you. i suggest you contact the head of practice to understand your docs reasoning, if, your doc is prepared to write a private prescription, he obviously has faith in the medicine, he just doesnT like the cost and the fact that he has to have insurance in case you sue him if it goes horribly wrong.... It isnT illegal for him to prescribe, and on the website attached to this forum are clear explanations of how your doctor is allowed to prescribe on a named patient basis. Http://www.thyroiduk.org.uk

How much medication do you have? It takes 2 or 3 weeks to order it in from abroad.

Armour was around for decades before the FDA took an interest, and it was then withdrawn, reformulated, and didn't work for many of us.

I would suggest that it wasn't just coincidence that a few years before this happened, we got the Internet, and the arrival of health forums such as this one, and many were raving about Armour on-line.

So, many people moved to ERFA, and recommended doing so on the forums. Result? ERFA went the same way as Armour.

So I really wish that people would no longer talk, or recommend, the various brands of NDT 'in the open' but confine those details to private messaging.

Many of us cannot survive without a 'good' NDT, and we can't afford more Armour/ERFA situations.

Wow.. 5 grains? I didn't even know they came in 5 grain sizes but some folks do require that much. I guess you will probably need to call around and see what you will be charged locally for the Armour. Armour is the most expensive NDT in the marketplace. Maybe time to think about substituting another NDT? Naturethroid is probably one of the most reasonably priced NDTs. If you choose to go with one of the 2 - 3 Thailand brands, it will be considerably cheaper than any of the US brands.

There are Canadian pharmacies that require a prescription and sell Naturethroid. They would probably let you substitute Naturethroid for your Armour. Or maybe ask your doctor/endo to write the rx as follows... 5 grains natural desiccated thyroid .... and follow with dosage (once per day etc). This allows you the freedom to fill with any NDT you like. Some pharmacies are sticklers about brand names tho. You can tell the endo that you are going to have to shop around price-wise. My NP cks the prescription allowing me 1000 tabs. Universal will only fill max 1/3 of any prescription that is filled with more than a month's worth of tabs so I used to get 300 Erfa at a time.

Universaldrug (rx required) has 100 - 1.5 grains Naturethroid for $ 34.00. You would need 3 + tabs per day but still not a bad price. All you do is set up your acct., pick out your meds, pay for them and then scan your prescription and save it. Email Universal and send the scanned copy of your rx as an attachment to the email and you are set to go. You might even call them and see if they can obtain the 5 grains Naturethroid as a special order and, if so, what would the price be.

If your doc has given you a prescription you are in a very strong position, you can buy NDT from almost anywhere - (you have to Google it!). It is not illegal to take NDT nor for your doc to prescribe it. It is simply not the main stream yet, although it will be very soon. The only problem is the drug companies, they can't patent (read, can't make billions of dollars) off NDT because it comes from a pig and they can't patent a pig. The big pharmaceuticals bully doctors into only prescribing Levo and the like. Stick to your convictions and go with what makes you feel well. I am in the same situation, I have a plan B should my Endo ever freak out and stop prescribing me NDT - I just Googled it.

On the basis that the alternatives to desiccated thyroid (levothyroxine and liothyronine) are not in patent, why would the companies care so much?

On the basis that one of the two main UK brands of levothyroxine and Armour Thyroid are part of the same company, why would the companies care so much? Especially as Armour Thyroid is so massively higher-priced than humble Actavis levothyroxine? Allergan would probably get much more profit if Armour Thyroid came into common use in the UK again.

Certainly the Synthroid marketing machine is a very powerful thing, and has maintained what appears to me to be a very high price for it it over the more than fifty years since it became regularly available.

Perhaps it's the egg-on-the-face effect. Big Phama has poured billions into Levo and Synthroid research and the like and it doesn't seem to be as effective as the NDT that has been around for a century or more. There is, of course, the added frustration that docs don't seem to know how to use it properly.

Could be a bit like still going to the shops on your bike because you don't know how to turn on your Tesla.

And yet many millions of people do just fine on T4-only treatment: I did for nearly 20 years. I appreciate that it may not have worked well for you but your own experience is just that: your OWN experience. As soon as anyone uses the term "big pharma" I tend to stop reading as what usually comes next is woo and a rambling rant, most of which seems to rely on the most tenuous of grasps on scientific principles and an awful lot of what-some-bloke-down-the-Internets-said.

Do pharmaceutical companies want to make a return on their research investment? Of course they do. It's a business. But trying to imply that all pharmaceutical companies are somehow evil because they want to stay in business and develop solutions to, say, Ebola, or you know, meningitis, is idiocy. No, they're not acting altruistically. But I don't expect them to. I do expect them to develop solutions for current problems like antibiotic-resistant strains of bacteria. And frankly will be very glad when they do. As I'm sure all folks who rant about "big pharm" will be too.

Grr.

Sorry, just sick to the back teeth of woo and conspiracy theories. Nothing personal.

I do, of course, realize that T4-only works for many people, I was one of them for 5 years until that maker (Forest) was run out of town by Activis and Forest’s T4 was replaced by some inadequately tested pill which was close to toxic to me. And, yes, as I said, T4-only works for many people, but many millions? I wish I could find the proportion of those for whom it works vs. those for whom it is one hair away from toxic. We will never be given those stats because it might bankrupt the manufacturer.

Now regarding “…your own experience is just that: your OWN experience…” When you get so many anecdotal complaints about a drug as you read on sites like this – and this is not the only site, then you have a perfectly reasonable statistical sample, worthy of looking into.

Before you sing the praises of drug making companies read the account of Martin Shkreli the pig who bought a drug making company and bumped the cost of an Aids drug from $13.50 per pill to $750 per pill! But his pill saves lives doesn’t it so we shouldn’t criticize should we, we should just be thankful, it’s just business and he deserves his profits doesn't he? (NO!). There are dozens of medical problems which have merit and solutions for many people but companies do not want to sink money into the R and D because there is not enough profit in it. It's a horrible thing to think about.

Hose, Stay in business? Yes, of course. But do the drug companies also gouge people.... often sick people who really need their meds? Absolutely. My husband requires an expensive antibiotic or he will die . It costs over $ 1600.00 per month. With insurance coverage, we still pay over $ 700.00 per month. And that is just at 2 pills per day. Look up Xifaxan. No way it costs that much to mfg.

Look at the difference in cost for digoxin. (it helps the heart to pump more forcefully) A few years ago, it was cheap as dirt.... about $ 2.00 for a month's supply.. now it is over $ 20.00. Look at what has happened to the price of T 3. You could get a few month's supply for $ 20.00 + dollars and now it is four times that much if you can find a quality product, that is. I used to get a thousand tabs of NDT for just over $ 100.00 (about 8 mons worth of product) and now it is over double that.

I admire your generosity of spirit towards the drug companies but I can't share it. I guess I am just too cynical based on my personal experience. I do agree with you that some do very well on T 4 only meds. I don't convert so have to have NDT. My sis tho, has been on synthroid for forty years and can't tolerate NDT. We are all different.

It is not illegal to prescribe Armour on the NHS. In their resources TPAUK have a copy of a letter from the Minister of Health to say so. You could show a copy of that to your doctor. However when a doctor prescribes a medication they are taking on personal responsibility for it. Some are scared to do this with an unlicensed drug. But, your doctor has already been prescribing it and seeing for him/herself that you are much better on it.

Also might be worth checking out the thyroid uk website for the "named patient basis" information leaflet they can post out. It explains that ur gp can prescribe ndt on a named patient basis as u have proof levothyroxine doesn't work for u. Many docs choose not to abide by this tho due to the cost on their budget and because of the rediculous lies they have been told by the big pharmaceutical companies about the effects of ndt.

Im lactose intolerant and my gp wouldnt prescribe lactose free levo and the start of my journey,due to its cost on his budget! Rediculous huh!

Easier to order ur own and less expensive that paying for a private prescription.

There is a Facebook page called "ftpo for thyroid patients only" and ud get lots of advice and help on there, along with sources where u can obtain ndt without a prescription. Xx

Is it your GP that won't prescribe or your endocrinologist? If it was your endo you could return to your GP and see if he/she will prescribe it for you. If not, then you could try and find a private endo that will prescribe or buy online.

I'm in a situation similar to yours because I was diagnosed with thyroid cancer which, was removed, but caused me to go seriously hypo. The synthetic drugs didn't work and my endo trialed me on Armour. This is making me better and is needed to stop the thyroid cancer from returning (I still have the left side of my thyroid and am still at risk of it returning) but, my GP refuses to prescribe it because it is not licensed. So, my endo is prescribing it but I have a 50 mile round trip on public transport to get it and he says that he cannot keep prescribing it because he doesn't have a big budget. He is trying to get the cancer hospital to prescribe beause it is a cancer drug I need but I'm still waiting!!! The system stinks and I'm so sorry that I cannot help you further.

Yes they do this, and do not care what "you know" since it is your body. My experience is no matter what I say, and even the actual labs proving what I say will not be believed. It is bizarre. They have tunnel vision.

I am hopeful as I have an appointment with a physician I found through a compounding pharmacy pharmacist. She will prescribe T3 along with T4, and looks at the whole picture. This is after seeing 2 endocrinologists who refused along with the internist who refused to prescribe.

Hi I99, thanks for pointing out that you sometimes have to move from doctor to doctor and from Endo to Endo. That is a concept that is very foreign to many trusting people, I was one. We tend to think our doctors know everything and it leaves us bewildered when we run up against one who is truly ignorant on concepts of the endocrine system. I have a regular, local, doctor who I can see for the snivels etc but my thyroid doctor is 200 miles away - that was another concept I had to get used to.

I never imagined that I would go to the doctors in this way - but it's just what you have to do.